*HI, I HAVE NOT AS YET BEEN DIAGNOSED WITH COGANS BUT I HAVE HAD MENIERER'S FOR17 YEARS NOW AND HAVE LOST MY HEARING IN MY LEFT EAR AND MOST IN MY RIGHT. I HAVE NOW HAD A BONE ANCHORED HEARING AID FITTED RECENTLY AND HOPE THAT THIS WORKS FOR ME. JUST BEFORE MY MENIERER'S WAS DIAGNOSED MY SIGHT STARTED TO GO AS WELL, I EXPERIENCED SEERING HOT PAIN IN MY EYE AND IT LASTED FOR WEEKS AT A TIME AND NOTHING SEEMED TO STOP THIS CONTINUAL PAIN. I HAVE FOR THE PAST 6 YEARS BEEN TELLING THE MEDICAL PROFESSION THAT I FELT THAT THE TWO THINGS WERE RELATED AND THEY DISMISSED IT WITHOUT ANOTHER THOUGHT; AND NOW I HAVE DONE SO MUCH RESEARCH ON COGANS I AM CONVINCED THAT THIS IS THE CAUSE OF MY SIGHT LOSS AND HAVE MENTIONED IT TO VARIOUS CONSULTANTS AND MY OWN GP AND THEY FEEL THAT I HAVE THE RIGHT ANSWER WHICH MOST ADMIT THEY HADNT THOUGHT ABOUT THE TWO THINGS BEING RELATED. IT WILL BE GOOD FOR A DIAGNOSIS. WHAT I WOULD LIKE TO KNOW IS THOSE OF YOU WHO HAVE BEEN DIANOSED WHAT SORT OF TESTS DO YOU HAVE TO SATISFY THE DOCTORS THAT IT IS COGANS. I HOPE THAT THERE ARE SOME PEOPLE OUT THERE WHO WILL ANSWER THIS FOR ME.

After 9 years with a Meniere's Disease diagnosis, now I have been introduced to Cogan's Syndrome as a possible change of diagnosis. The inner ear symptoms of Meniere's and Cogan's apparently are the same. I have total hearing loss both ears since 2005, and an unsuccessful cochlear implant due to fibrous scar tissue in the cochlea (preventing total insertion of the electrode array).
Now I have had a "stroke" in my right eye, damaging the optic nerve with accompanying vision loss.
My blood work shows that I have inflammation elsewhere in my body, but rather than biopsy every organ, including my brain, I am starting on Cellcept (along with prednisone) as an immune suppresant.
I am trying to preserve the rest of my vision and prevent future strokes. However the tradeoff of long-term immunity suppression is difficult to manage.
I go once a month for tests to determine organ damage, cancer or other complications.
I am looking for other people with experience in this process.
Anybody out there?

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

Complete the screening form.

Review the informed consent.

Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

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